Power in Unspoken Words

Sometimes words that aren’t actually spoken out loud are the most powerful of all. Lou is the married father of three. His eldest daughter has autism. You can read more at blog, Lou’s Land.

A message from Lou:

Sometimes anger can really inspire you. Sometimes it is the simple ideas that are the most effective. When the two come together, it can lead to something really special. That has been the experience I have had with my “Fixing” Autism video.

I don’t think anybody would ever describe me as a braggart, but this time I am not going to shy away from being proud of something I created. Probably because this time it is personal. Have you ever reached your limit? On August 13th, I had reached mine.

I had a simple plan. Share my story and back up my frustration with facts. The numbers had been driving me mad for months. While doing some research on autism statistics, I had come across a page on the Autism Speaks website entitled; “Facts about Autism” and the numbers were dizzying. The disparity in funding made me sick to my stomach. Most people of child bearing age know the basic statistic that 1 in 110 children in the US will be diagnosed with Autism Spectrum Disorder, what most people don’t know is the frustration that comes from the parents of autistic kids when they see the complete lack of equal funding for something that appears epidemic in nature, particularly to those involved.

I must have visited that page 10 times. Each time I looked at the numbers my frustration increased. As I stared at my computer screen, I felt like more people needed to understand these statistics. They were absolutely vital to the war that parents dealing with ASD are fighting every day. Those numbers are why these parents have to struggle. But while I found the numbers important and interesting, I really felt like they were dead on the page. Reading statistics is not exactly exciting. It isn’t “sexy” as the Hollywood types say. That is when the light bulb turned on.

I had to give the numbers meaning. I had to personalize them. I had to add a human element to what those statistics meant to the parents of an autistic child. To do that, I knew that I would have to make myself a little vulnerable. I had to tell our story and why I felt those numbers had to be shared. What I realized as I made my notes was that it really wasn’t MY story. It was OUR story. The autism community has a shared experience of embarrassment, shame, anger and helplessness. Often times, all of these chips stacked against us result in us being quiet and shutting down. We become discouraged and for fear of being denied yet another service we view as vital but the insurance companies see as “experimental”… we do nothing, paralyzed by fear.

Powered by a lack of sleep from staying up with Bianca most of the night, I opened up some notes I had emailed to myself and started to transfer those thoughts to index cards. I knew exactly what song I wanted to use because a few months earlier I broke down in the car when it came on the radio. It made me think about my daughter. As a man, I could certainly relate to the idea of desperately wanting to “fix” something. That feeling tends to be instinctual to us men folk when we see that something is wrong. We want to fix it. Sometimes we make it worse, other times we may just confuse the situation, but when we are really fortunate we can set things right.

That is what I hoped to do… make things right. Affect change. Change the dialogue. Make other parents that are in my situation feel like they can scream from the mountaintops about the injustice and the frustration that comes wrapped up in a red-tape bow every time you have to talk to the insurance company, or go over an IEP. I wanted to make it so that others knew that it was OK to be mad as hell that they have filled out yet ANOTHER form asking what your child’s limitations are, while seeming to care less about what they excel at. I wanted to affect a person with neuro-typical kids in such a way that when they see a child acting up in public, they glance over not with disdain but with compassion.

So I had a webcam, index cards, an MP3 and most importantly the raw, honest truth. After I edited the piece together I clicked play to review my work. I felt like I was watching it for the first time. As if I wasn’t even the one in the video… and I knew it was right. Sure there are some technical things I would like to change… but the message was dead on.

I debated just putting the video up on my Facebook page, but that was safe. I really wanted this message to be heard. I was proud, and I was still angry. I uploaded it to YouTube, told some friends about it, and shared it on the Autism Speaks Facebook page. The reaction was immediate and incredibly humbling. It gave me the motivation to promote it with a little more gusto. An old co-worker of mine believed in the message so much that she started to promote the video all over the Twitterverse. That gave me even more energy to feed off of, and before you knew it the video was being seen by important people in the autism community. Imagine my surprise when I took Bianca to therapy with the intention of telling the therapists about the video only to have them tell me that they saw and loved it before I could bring it up. I was stunned.

So I encourage my fellow parents out there in Autismland… don’t just talk to others about your experience… SCREAM it. It doesn’t have to be a video. All you need is to own the truth. It is OK. It isn’t whining if there is injustice. When insurance companies will pay for people’s allergy shots because their new girlfriend has a kitty, but not for my daughter’s speech therapy… and she CAN’T COMMUNICATE… it is OK to be mad. Let’s end the shame and the silence and start holding people accountable.

Lou, your daughter is truly belssed to have you for her dad and the love and determination you show. the Autism world needs many more parents like you – those who are not afraid to be heard and who are willing to challenge others who are still in the dark about Autism.

Autistic children may be a challenge but more importantaly, they are a true gift and can teach each of us so much about love and honesty if we are only not afraid to look at what is truly there.

SCREAM and let the world know that Autism is something that we can understand and live with . . . .there is so much love in these children ! OPEN OUR EYES AND UNDERSTAND!

Powerful e-mail – very appropriate song (tears streaming….) but I personally have a problem with the ‘fix you’. But that’s just me. I understand your need to ‘fix’ but I told myself a long time ago when I realized our eldest daughter was quite different from her age group, that she is who she is and I will celebrate that. Help her become the best that she can be and, as she has grown-up, help her to help herself become even more. I felt my ‘cries’ with so many of your index card comments. Each child is different with many different needs and I think that makes it so hard to ‘generalize’ this condition. The statistics are staggering and very saddening. I wish you well on your journey and look forward to reading your blog as you progress.

Thank you so much for this inspiring video. I couldn’t have said it better myself! My son is 6. He and every child with autism is a precious gift from God. They need their voices heard. If everyone listens, we could all learn some amazing things. We just have to listen!

this video is so powerful, i felt like i was seeing my life, i dont think a day goes by that it doesnt hurt but just like you Lou, i am a FIGHTER!this has moved me to tears and i thank you for your awareness, God bless your daughter Lou, she is ‘normal’, she just sees the world in her own beautiful way :)

It is powerful but I don’t like the “Fix You” part :( Maybe because I wouldn’t want someone to “fix me” maybe just the choice of words? Everyone is Different and Unique. Don’t end on “fix you” how about “Accept You” :) *Hugs* I can completely understand but Acceptance, Guidance and Love goes “the distance”. We give and we give to Live!

Thank you for sharing Noreen. I can assure you I do not want to fix my daughter in the way you are probably thinking. I placed the word “fix” in quotes on purpose. It means a lot of things… I want to change the system, I want to be a better advocate, I want to change the dialogue, I want to remove the shame and embarrassment that creeps in when we go out in public and our children break down.

I hope that makes sense to you, and that if asked by others you can express my feelings.

Thank you for taking the time to watch my video and for commenting. It means the world to my family.

THANK YOU very much for taking time to make this video. Our son was diagnosed 9 months ago. I have not had time to cry and grieve. Your video has helped me to release much needed tears. Sometimes we spend so much time fighting and being strong, we do not give ourselves permission to hurt. Blessings!

I was very moved by your video. I work with a child with autism and she is the sweetest girl I know. If it wasnt for her mother fighting for her everyday she wouldnt be who she is today. She has come so far and people told her she wouldnt do any of the things she is doing today like, reading . math getting up in front of the class and doing a report on Abe Lincoln doing school plays. Dont give up and dont stop fighting for her . I agree with the comments about “fixing” her I would like to see accept her. I wish you luck and Hope that your daughter finds a great aide who will love her accept her and push her to reach whats inside of her . Your daughter is very lucky to have you God Bless

The “Fix” you part is more of a parody on the word in my eyes. Hence the quote marks around “fix”. I think many times you can be around your kiddo that thinks in literal terms you avoid idioms, sarcasm and satire. Then it moves into your own thought processes in that avoiding them within your own vernacular. This was one of the difficulties I had with my child in that I’m a smart ass; sarcasm, satire and idioms are part of my personality. He takes them literally so telling him “to hold his horses, cowboy” is lost in that he is looking for the Cisco Kid while you’re asking him to slow down, You realize you are the one who needs to slow down, think in his terms and rephrase many observations

It’s who I am and in many ways it was/is coping mechanism throughout the diagnoses, challenges and continuing therapies.

I have since changed my vocabulary around the kiddo but still appreciate satire and sarcasm. It annoys my wife but at the same time she understands that there is an outlet between our dialogue with each other that we realize we can’t use in front of our son. When you get an Insurance Company statement denying coverage for treatment of neuro-developmental therapies, recommended and referred by a professional as necessary, and I say “best healthcare system in the world”, she get’s the sarcasm and parody whereas my son would take it literally.

And I didn’t cry one bit watching the video it just must be dusty in here and allergy season. Something in my eye.

Thank you for sharing this. It brought a big smile to face to see another post where somebody really understands the difference between me saying I want to “fix” my daughter, and I want to FIX my daughter.

Lou, God bless you and your daughter. She is a very fortunate girl to have such a caring father. That video is a truly great tribute to your daughter and your fatherly love for her. The only part I disagree with is the ‘fix you’. Autism can’t be fixed, but you and I, and the rest of the world can be fixed to be more accepting of people on the spectrum.

you hit my spot, unbelievable what you express.
with tears in my eyes i thank you for for bringing out hard transparant facts,
and the effort that goes with it.
dont despair, I dont either.
father of a 20 year old daughter with autism, she battles harder than we.
Ton A Taselaar, Netherlands.

What an amazing way to express and give a “voice” to autism. This was very expressive, informative, and just brought a tear to my eye. My son is a screamer and can only speak when he is prompted – and while I watched your video all I kept seeing was my son. Continue being an advocate for your child!

SO INSPIRING AND HEARTFELT – Thank you for making this. I actually read your story first before watching the video, and unexpectedly the tears started to pour out when you mentioned the allergy shot for the new kitty …

“When insurance companies will pay for people’s allergy shots because their new girlfriend has a kitty, but not for my daughter’s speech therapy… and she CAN’T COMMUNICATE…”

My son with autism is almost 5 and has not said ONE WORD YET, and the insurance company won’t pay for Speech because “it is likely not to be fixed within 6 months”…wow. But that won’t stop us…

I will be passing this along to others…you summed up our whole experience with autism in a short, very powerful, 5 minutes. Thank you…

Dear Daddy Lou,
Your daughter Bianca is blessed to have you at her side. As a professional whom is with children like Bianca every school day, I promise to do my utmost best to keep them connected to us and the world. Together we can make a difference…and “we” is a large number out there. Love to Bianca and you…Carolyn

Thanks, Lou! From a dad who needs to do more! You and your “fight” for Bianca and for all the things that we in Autismworld do on a daily basis, are inspiring. Again, thanks from Jack’s dad, he would say it if he could speak!

Words can’t express the connection I feel from your blog and video. I too am a father of an Autistic child. You have summed up my feelings of anger, frustration and fear in one heart wrenching blog. My son Luke (5) amazes me every day. Parents of “typical” children just don’t understand or comprehend the lives we lead and battles we fight on a daily basis. My son needs me to man-up and be a voice for him. You are a MAN amoung men. You have inspired me! Thank you.

I just saw your moving video and read your blog. I admire your courage to speak out. I related to your article on so many levels. I am the mother of an adult daughter, Tara, a self-taught pianist and composer who deals with autism.

Your message of speaking out drove right to my heart because we, as a family, did our part to do just that, collaborating on the “Starabella” audio/picture book series for children based on the childhood experiences and music of my daughter Tara.

Tara wrote music to give herself courage and to create a musical, magical world of empathy and understanding. The story behind the story tells of the special relationship of Tara and her sister Dana, a talented singer. Tara and Dana have always come together through their music. The performance of this series is a collaboration of the two sisters.

I was motivated, like you, to tell of our experiences in order to provoke societal change. The challenges of children and their families dealing with autism are too often superseded by the obstacles and negative attitudes we face with society. It was our family’s goal, like yours, with our project to replace disdain with compassion, understanding, and especially, respect for our children.
Through our story’s heroine, Starabella, we show that children with “extra challenges” face each day in the public arena with the courage of super heroes/heroines.

I am writing to you because I would like to send copies of our books as a gift to you to share with your daughter. I believe that your daughter will find that she will relate to some of Starabella’s feelings and experiences.

Starabella is a courageous little girl with learning differences whose eyes shine like stars when she is happy. As she begins to grow up, her words start to get lost somewhere inside her. She receives a gift of love from her grandparents, a piano. It turns out that Starabella has musical talent! She can play any music she hears by ear and soon composes her own music to express her feelings and reflections of the world around her. Her character and inner self are shown through her music. I know that you understand the power of music to relate to others in that you carefully picked music that reflected your emotions to back up your video.

If you are interested n receiving the books, I would appreciate your sending me your mailing address by personal email.I was not able to find yours.

This was such an amazing introductory. My daughter and nephew has autism, and it’s been hard on the family. Everything that you described we’ve pretty much gone through from the looks by strangers, the embarassment of the disorder, the frustrations of not knowing what to do or what behavorial problem we will be faced with next. It’s tough, no one knows how tough. I spend most of my nights awake worrying about her, how will the kids treat her in school, will she be discriminated, will she be lost in our system. The thoughts keep flowing but the solutions are still yet to be found. You’re so right, all I want to do is fix it, the situation, fix this, from happening to anyone else, fix it, Autism.

I can agree with fixing the funding and the insurance coverage and like many others your video made me cry. I read your post on Diary of a Mom’s site, so I get that you love your daughter and just want to help her and fix the broken system. Thanks for explaining that. I think more people would respond positively to your video if it said fix the broken system to help her instead of “fix” her. I know that is how I feel since I have a teenager on the spectrum who has overcome many challenges and is blogging about them.

Thank you so much for making such a beautiful and very touching video. It shows the great love and determination you have in your heart. I understand what you are feeling – I feel it also.
You are very right – we must all continue to do our part. Find every opportunity and create changes. Your video is a strong voice for this.
Your Bianca is very blessed to have a daddy like you there for her. Keep doing what you do. Thank you.

Lou, thank you so much for sharing your thoughts! I am the grandmother of a beautiful 12yr. old grandson with autism and I understand so much of what you expressed and I love that you used the piece of music that you did to illustrate how you felt. I think that even those people who were troubled with your use of the word “fix” have probably experienced those same feelings in their journey but have come to a place of acceptance that makes the word less of a reality. I just think it’s a matter of semantics. We who are struggling with multiple-therapies and the other challenges of helping steer a child with autism through this world recognize the care, compassion and love you have for Bianca and thank you for being brave enough to be vulnerable. God bless you, Bianca and the rest of your family!

Oh yeah Lou! I’m not sure where you live but check into getting a Medicaid waiver. Medicaid will pay for a lot of services that the profit hungry insurance companies won’t pay for! Hope that will help you until there is insurance reform. She needs her speech therapy now not later!

Lou, Very Powerful. You had me crying. You summed up exactly what I feel, but I didn’t know how to put it in words….and the Song!!!! PERFECT!!!!
I’ve quoted from Lou’s message below:

“That is what I hoped to do… make things right. Affect change. Change the dialogue. Make other parents that are in my situation feel like they can scream from the mountaintops about the injustice and the frustration that comes wrapped up in a red-tape bow every time you have to talk to the insurance company, or go over an IEP. I wanted to make it so that others knew that it was OK to be mad as hell that they have filled out yet ANOTHER form asking what your child’s limitations are, while seeming to care less about what they excel at. I wanted to affect a person with neuro-typical kids in such a way that when they see a child acting up in public, they glance over not with disdain but with compassion.”

Leta msg: our children are the brightest, most intelligent, most talented and most unique people on Earth. We only need to “FIX” the view of the people that can’t see that.

Absolutely mind blowing – and i totally get the “fix” part. So many times people ask me how to “fix” my two son’s disorders. I just smile and say one day at a time one smile at a time. Thank you from the bottom of my heart for not only making this beautiful video but giving a voice to the stress a marriage can receive AND the stress the siblings feel through it all. Thank you thank you thank you. You ROCK!